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 Hospice 
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Joined: Fri Aug 06, 2010 10:07 pm
Posts: 19
Location: Dallas, TX
Post Re: Hospice
Oh my heavens Nan, your dear has really lost some weight. How sad that such a substantial weight loss isn't a sufficient sign of illness to merit the extra care.


Sat Aug 07, 2010 4:05 pm
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Joined: Fri Aug 06, 2010 10:07 pm
Posts: 19
Location: Dallas, TX
Post Re: Hospice
An update to the issue of Hospice eligibility.... after a heartrending hour and a half interview with the national hospice organization whose case manager published the power point discussion I referenced in my earlier post, I learned that Dad definitely falls within the PPS 40 criteria (which I hoped would support his admission), but that his FAST scale is, by their estimate, a 5. Prior to Dad's eval, I really thought the PPS 40 would get him access to the greater care, but the light of experience shines brightly: this admission decision was dominated by the FAST scale and I'm going to have to get even more creative in my efforts at care, as I understand you ALL have had to do, in applying limited resources to the challenges of this disease. My hat is OFF to every single in-home caregiver among you.


Mon Aug 16, 2010 6:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
Have any of you had a situation where the hospice nurse and dr. agree to take a person off certain meds, but one of the patient's drs. comes in a puts the person back on the meds after they've been removed? And, the dr. fails to notify or discuss this with the family? Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Sep 04, 2010 7:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
I went to a hospice house today to see what it is like and to see if my dad should be moved there. It was a fabulous facility, with only 6 beds, 2 med techs and 1 RN. I think it would be a nice place for my dad but I am concerned about moving him at this point. Having to get used to new staff, a new room, and what could be a stressful ride in an ambulance are the downsides. I haven't figured out what would be better for him.
Met with his current hospice nurse (she works in a different county than where this hospice house is) and she gave me a really good booklet on End of Life signs. Her estimate is that he has about 3 weeks left, if he stays on the same degree of decline. I wish I'd had this booklet a few months ago. My sister and husband read it too, which is helpful that we all have the same info. I'm usually the only one reading and doing any research...... Have any of you had to move your LO in their last few days or weeks? If so, how did it go? Thanks, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Nov 23, 2010 9:43 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
Lynn,

I think you'll find that everyone who moved an LO to an in-patient hospice facility moved them within 1-10 days of death. I'm pretty sure these people posted about their LOs moving: Sandy and Renata.

"Gone from my Sight" is a nice booklet. Let me put in a plug for "Final Gifts" and "Final Journeys." "Final Gifts" in particular addresses what family and friends should say to their loved ones when dying.

Robin


Tue Nov 23, 2010 10:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
Thanks. I think the hospice house had both of those and maybe I can stop by and borrow them tomorrow. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Nov 23, 2010 10:14 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hospice
Lynn,
You asked if anyone moved their LO and I did ! I brought Jim home 3 days before he passed away, hospice transported him and set him up in our home, it went well but we also knew he was actively dying.

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Irene Selak


Sat Nov 27, 2010 7:03 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: Hospice
Hi Lynn, I moved Tom to our local Hospice facility 2 days prior to his passing. I was nervous about the move at the time, but I am beyond grateful that I did. The staff there were prepared for the situation and were very caring towards him and extremely supportive to both myself and our teenage daughter. They were also very helpful and supportive regarding brain donation, and with Robin's help that was completed flawlessly. I really don't believe any aspect would have been possible in our ALF (and we were happy with the ALF) There was just an added sense of calm and peace at Hospice.
It is a very difficult road ahead but just trust your instincts.
God Bless
Sandilee


Sat Nov 27, 2010 10:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
Thank you all. I really hate to disrupt him but I want the best care I can get for him at the end of his life. I really don't want him to be uncomfortable, so I am relying a lot on his hospice nurse to help me make this decision. I think going with my gut may be the best at this point. I keep gathering data and trying to balance the pros and cons, and I keep coming out 50/50 which is not helpful! If I do move him to the hospice house he will not have the CNPs who have been such an issue to deal with. That is definitely in the plus column! He'd be in another town where they do not work, so that's a good thing. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Nov 27, 2010 10:52 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hospice
Lynn,
Another thing you can factor in is: At the ALF when end of life does come more than likely he will be alone unless family is there where as in Hospice he won't, the hospice nurses have a keen sense when the end is coming and will do everything for him to keep him comfortable until the end the family won't have to fight for it and wait for an order to be signed, Just my 2 cents worth!

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Irene Selak


Sun Nov 28, 2010 8:25 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
I just received the call from Dale's primary care doctor telling me that Dale has now been formally recommended for hospice. All the 't's' have been crossed and the 'i's' dotted. :lol: The authorization has been signed.
I can certainly use the help!

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 07, 2011 4:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
Phew - glad you've been accepted into hospice. It really will be good to have the extra hands as well as minds and hearts to help you through the next difficult stages.
I was just reading my old posts on this topic - my dad died 3 days after my last posting. I'm glad we did not move him to the hospice house, nice as it was. The caregiver who recognized that "something had changed" in the last minute and several others who had known and cared for him his last 18 months were able to be with him, and that has been comforting to me, that he was not with total strangers.
You'll appreciate the extra shoulders to lean on/cry on, I'll bet! Big hugs, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 07, 2011 7:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Glad to hear it, Leone. Most people actually wait too long to get on Hospice. But then, dementias are hard to predict. Hoping to hear you're getting the help you need. Hugs!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Mar 07, 2011 7:21 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Hospice
Leone, I am happy for you and Dale that he has been accepted into hospice. I will be following your posts carefully over the next months to see what help you are getting. I have heard conflicting stories about hospice and I value your opinion. Of course, that was hospice here and I know there are differing hospice programs and hospice workers and that does make a difference.
Hugs to you, Leone, at this hard time. Nan


Mon Mar 07, 2011 8:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
Nan - you are so right. They can vary greatly re: not only personalities but rules, procedures, etc. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 07, 2011 8:49 pm
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